Ichthyosis...HELP!

Thank you Carly for writing this. I'd like to pride myself and my family for what we do in our lives. Yes, we are affected by Harlequin Ichthyosis. But our story doesn't stop there. Last year, and I'm sure I will repost anyway, I went through two of the most horrific experiences in a long time. And that was because I have HI. Raising awareness is everything. Please read Carly's piece here.

 But don't just let it stop at a skin disorder. Look at the outer box. Look at people with a visible  difference and their job success rate. I am lucky that I work in an inclusive office. But I know that not everyone is as blessed as me. I may have a skin disorder but upstairs, I'm just me. A regular human being with a penchant for rugby activities and doing completely inappropriate things at the wrong time. What people and employers should ideally understand, is that we are just as capable as the person next to us. True story.

 I work at an NGO as a teacher for people with special needs. And my mum found me that job when I was 18. 5 years later, I am now in charge of creative digital media like photography and video production. I am also a co-coordinator for International Service Development, effectively communicating with clients to promote our work. This job is hard. And I can sometimes be found in the office on a Saturday catching up. And my phone is how I answer emails from everyone work related. Not easy. But with the support of colleagues, I have made a mark. And guess what? No one realizes on the phone that I have Ichthyosis. Its only when I meet them in person and even then, I am welcomed.
 
Sharing photos and information is a vital tool in our world. But like Carly, i try to exercise caution. I am aware of what I share, will not always be met with grace and praise. I am aware that no everyone will be thrilled to see photos of feet and raw bloody skin. If you are unsure of what on earth is happening, its cool to post questions, but post the photos to people through their inbox…if they want to see. Oversharing has been a massive learning curve for me. And for me and my life, I only share what I want others to see. I have plenty of things I really don’t need the world to know or see. Its all about your own privacy.

Last year, and I’m sure FB will remind me eventually, I had a pretty horrific time with Bus Discrimination and shock videos. It was absolutely horrible to deal with and it was amazing how so many people came together to support my family through it all. BUT...and I say this with absolute caution…

People with visible differences or special needs will sadly be a target for trolls. I was surrounded by so many wonderful people who offered their love and support, both privately and publicly during that time. BUT, I know that not everyone has access to that. Organisations who advocate for us, should understand that when YOU are the targeted party, you feel utterly helpless and devastated that you’ve been reminded of your differences. YOU deserve the best support available. There is no point in simply saying that you’ve reported the incident and waiting on an action. Because it doesn’t help you emotionally, you are basically, screwed.
It makes all the difference to even receive a private inbox message, just checking in and asking how you are holding up. 

And I wish that organisations would recognise that if you are to help through some horrible experience, personalization makes all the difference.

I absolutely stand by what Carly says when she hopes that organizations that support us should look at the bigger picture. We are not simply looking at a skin disorder. Oh no. As you may have seen with our Facebook page, The Girl Behind The Face, we look at the bigger picture. We look at how our lives are affected.  Ichthyosis is not only about pouring money into research, which saddens me, because I know that it will take a while before much headway is made into a cure. Ichthyosis is life, its dealing with daily life, it’s dealing with bullying, job prospects, the whole shebang. So if we could get more life skills from the organizations, that would be amazing, it embraces everyone, better than trying to suggest things that not everyone in the world has access to.

 People have been living with Ichthyosis and visible difference for a long time. Granted, I’m not the most clued up because I’ve tended to focus what’s in front of me. But, you look around the internet and you see that adults have come before us with Ichthyosis, bringing with them a whole wealth of knowledge. Granted, if anyone asks me, go to our Facebook, it’s much more informative than I will ever be J. So anyone who reads this, utilize people who have been through it all before, it’s a lot more informative than Wikipedia will ever be.
 I have, in this day and age, been inclined to approach others in my network for advice on managing my skin condition. I trust their judgement because it is tried and tested. And I have also learnt, what works for one, may not work for someone else.

 Having grown up within the enclaves of a diverse Hong Kong (China by the way), I have been afforded so many opportunities by so many. Whilst I have a day job, I also terrify myself sometimes with the fact that I literally don’t slow down. With refereeing duties, events, sail volunteering, along with helping to raise our profile in the world, I really don’t stop. But what I have, is a result of networking, which not everyone has access to. And for organizations to provide links and networking, hopefully people will be more confident in presenting themselves out to the world.

 I have been involved in enough rugby events to know that I am in a community that accepts people, no matter what they are facing, be it a disability or something else. I have been afforded some brilliant opportunities by way of the fact that organizers and the head of referees realise that yes, I have a medical condition, but that doesn’t stop me from being involved in such a great game. My mind is completely on the ball, hence why I have been able to be involved in premiership scoring and sin bin documentation.

 As my refereeing hero Nigel Owens has said many a time,
"Rugby is without a doubt the greatest team sport on the pitch, but without a doubt, the greatest team sport off it as well".

Just because I have been afforded brilliant opportunities, it is my hope that more and more people will have just the same or even better experiences than myself. And if Ichthyosis Awareness Month can help others gain more confidence, awesome!

My Fitness is Shite - My Perspective

Put it all into perspective and we can all agree that the only reason I look like I'm relatively fit is all down to refereeing, running after people and the general loathing of sitting still. And just because you have a high metabolism doesn't excuse being lazy. 

Living with Ichthyosis presents its challenges and when it comes to health and wellness, it's playing with fire. You try things and you either fail or succeed. What works for some, won't work with others. What I hope to write down here is a breakdown of the way I work around my fitness and its obstacles. By the way, I am no doctor, but simply describing what works for me. 

When it comes to running, I'm a sprinter. I don't like short distances very much and  with long distances, it's a lot easier to pace myself and work my way around. As a rugby referee who does an insane amount of quick turns to keep up with the pace of the game, it's a work in progress. Our referees fitness trainer is helping me master the turns with cleaner efficiency without the fear of damaging my knee, which lets be honest, is probably in a terrible state as I write this! 

I haven't always been this fit. In school I didn't really take part in PE lessons much for a couple of reasons, 

- the weather was playing mind games (remembering HK is a hot and humid wasteland)

- I was repeating my AS Level Art qualification (we don't talk of this!)

- I just didn't really get my arse in gear

I think it was only when I joined the referees fraternity at about 16/17/18 when I realized that if I wanted to get better games and move up the ranks, I was going to need to up the ante and get with the programme. I think it did slightly shock my ex PE teachers when news got out that the lazy got got her arse in gear and was caught sprint around pitches. 

One big thing about Ichthyosis is the risk of brittle bones and osteoporosis. This is what kind of got in the way of things. But with the help of my wonderful family doctor, we started working toward making my bones stronger with vitamins and lots of good stuff. Because of this, I can worry less about my bones shattering and more about my real goals. 

So back to what I do. 

So Wednesday nights, we have fitness training where believe me, the bar is set pretty high by our trainer Wai from Pinnacle. This season, I don't think I've actually come away from training without cursing him from under my breath. But for all its worth, the drills, the circuits, the pitch laps, timed runs and more, it's all paid off as keeping up with the players and their 12 year old pace is not nearly as painful as it once was. I also honestly believe that training with like minded individuals really ups the motivation levels and it's equally important to work with someone who you have a good connection with. I've been lucky so far in having some great trainers who have yelled, cajoled, encouraged and dissed me as I train. Character building I tell ya!

If I happen to have a good week where I'm back in Sai Kung in the early-ish evenings, I like to try and get myself on a road run from our sleepy little village (some may argue that point) and up a couple of slopes and roads which ultimately leads me into Sai Kung Town. This is a roughly 4km-ish venture and is a good way to pass time while the washing machine load does its thing. Bear in mind, this isn't a full on sprint, but a steady run. I would never sprint up a steep slope where I live...I walk up those parts before gathering the pace again for the flatter parts. This, depending on my pace can be done in max 45 minutes in cool weather. But we will revisit this in the summer. 

I also wear a FitBit flex. I like to wear something that counts my steps daily and makes sure that I am on my feet often. The recommended step target is 10,000 steps, but I push my buttons and aim for 13,500 steps at least! I find that it gives me satisfaction that I've not been sitting on my lazy arse at work all day when I feel that vibration on my wrist telling me I've hit my goal for the day. 

Nutrition and hydration is also key to a decent level of fitness. Now I'd like to think I'm pretty disciplined when my eating habits are concerned but here we go. 

The average Ichthyosis person should ideally be downing roughly 10,000 calories a day. And to think that the average person usually eats 2500 a day. That just scares me shitless. And no, I don't hit the 10k mark. My wallet would hate me so much. I think that in reality, most of my wages go on food. Yeah. I know. 

As with most humans who work, the mentality is that at the beginning of the month, you eat well because your wallet has been restocked. But by the end of it, well, instant rice noodles are right up there. 

I eat a fairly healthy feed which all depends on my activities for the day. But as a base, I'm not overly keen on processed foods but sometimes, needs must. But some of my favorite things to eat and drink include, 

Sushi, 

kale chips or raw veggie chips

meat, 

rice (not the sticky kind you find in a rice box) 

Mixed fruit and veg Juices

Kombucha 

Nuts

Water

Anything that packs a major punch of flavour. It's dull eating something that's not colourful or full of flavour. 

I'm a big fan of whole foods as I have learned, rather belatedly. that you are what you eat. And while things like quavers, pork scratchings and all that processed comfort food is not the most nutritionally packed thing to eat, I won't hesitate to eat those too, in moderation. That's the thing, if you look after yourself, I don't see why you can't treat yourself every now and then. If I want to have a bag of crisps or sweets, I will, because I know that in moderation, I'm not killing my body completely. 

If I've been to training or I've done a morning of refereeing, my first thing to do afterwards is shove some food into my mouth as I refuse to eat two hours before heavy intensity workouts. And the sight of your last meal on the pitch can't be a pleasant sight! But I might throw in a protein shake or some form of liquid and down that, just to keep me going for long enough. I really have a love hate relationship with protein powder as it's hard to find an affordable one which tastes okay but doesn't have the crap that normally goes into them. I'm a fan of the Vega protein range which is plant based. If I'm refereeing, I like to mix that with a peach flavoured Isoflex protein powder. So I'm getting an absolute protein punch. It tastes vile of course, but when it packs in over 30g of protein and holds me for an entire morning, I shan't complain! 

Hydrating is a massive thing for me as well. It's not uncommon for me to be carrying around a big bottle of water. When I do remember to put in, I absolutely love my 1ltre Camelbak Chute bottle which despite the abuse I put it through, somehow still looks amazing. But for me, drinking liquids for me is a big thing. I'm a sucker for coconut water after training. But as I mentioned before, if needs must, I will also drink sugary electrolyte drinks to rebuild my energy. I'm a fan of Lucozade energy and Pocari Sweat. 

And no I don't run barefoot. For a road run or when I forget my boots at training (shock horror!) I own a pair of Asics Gel Nimbus 16s bought for me by my lovely grandma last year. Yes they're expensive, but they have offered me great cushioning and support for my heels as I run while digging (don't ask). For boots when I'm refereeing or on turf or a grass pitch, it's not difficult to find me in purple zebra patterned X-Blades. Comfortable, but light, those are my babies. 

Now, dear folks, what I've written today is what works for me. What works for one, may not work for someone else. I'm constantly learning about my own limitations and what works well. One thing in particular is the foam roller and deep tissue ball. I'm fairly high pain threshold and actually love the feeling of further abusing myself after fitness sessions. But with others, their skin could break with the spikes of the roller or deep tissue ball.  

I wanted to write this because as someone with Ichthyosis and a somewhat compromised body, I wanted to throw it out there that with the right balance and structures, it's certainly possible to embark on a fit life. It's all about common sense, motivation and a desire to be the best you can be. And talking to professionals works a charm as well!

AN: I've included brand name products in this post. Not because I represent them (I don't), but because these are the products I know, love and trust. And if I get a request to be a brand rep, awesome! 

Do I look like I know What I'm Doing?

No, most of the time, I find myself hopping around like a headless chicken. But that's beside the point of writing this today. So it's been a while since I've decided to write, but I might as well say Happy Chinese New Year, or Kung Hei Fat choi. 

It's been a while and lots has gone on since December. I turned 23 (sh't), it was Christmas (yay), I started off the new year on a roll and so far, it's gone according to plan. Well the weather has been Baltic recently but we can deal with that. 

My post today is just a bit of a ramble if I'm honest. I'm quite excited about the state of my washing machine. Given the fact that I have never actually cleaned it before and when you have Ichthyosis, your washing machine is likely to break down a couple of times. But but but, after being told off about the state of my washing machine, I walked into the nearest hardware store and bought 2 litres of Swipe. Multipurpose cleaner which happened to also pick up about 5 years worth of well, crap quite frankly. I also bought some kind of Japanese washing machine cleaner and oh my god, I have never seen such a sparkly shiny drum after it did it's work :-). The liquids I used were a bit potent in strength, but given my plain and simple neglect in the past, it was needed to do its job. As I write this, it's currently going through a last cycle before I start loading it again tomorrow. It's days when I'm thankful for public holidays since it means I can actually do things I've been supposed to do for the past year (or 5). 

Chinese New Year in HK was certainly newsworthy. There was a riot down in Mong Kok, the land of smelly tofu, cheap markets selling fake branded items and a tourist Mecca. There were a couple of illegal hawkers doing their thing, but the popo weren't too impressed and nor were the hawkers themselves after being found out. But anyways, cutting to the chase, it pains me to see a part of Hong Kong absolutely thrashed to the point that the train system decides to skip their station stop. I live quite away from Mong Kok, but I know the area as my school was nearby. To see people chucking bins at people and bricks being thrown. I think to myself, "what the hell happened?" This isn't London, this is Hong Kong. But I hope that out of this, people realize that if you do something illegal, guess what, prepare to get into some bother, it's bound to go down badly. 

So I now flitter back to the all time entertainer, the rugby :-)

I had the opportunity to work at the Highlanders vs Racing 92 game when they were in Hong Kong recently. I was on the scores with my mate Harry, who just happens to be a better referee than myself, I'm so not jealous (hides in corner). Anyhow, the match took place in Chai Wan, some place in a place called Siu Sai Wan, or as I like to call it, the middle of buttf*cknowhere. It was an awesome game though with beautiful weather and the result of it all was that I ended up abandoning my Welsh roots for that night and posed for a photo with Dan Carter, lovely bloke by the way, but he's Kiwi :-). But I further redeemed myself after snagging a selfie with Mike Phillips during the opening match of the 6 Nations, France vs Italy. Classy times in the Sportsmans Bar of the Hong Kong Football Club. 

It's been short and sweet, but I'll be back when I have a bit more inspiration up my sleeve and the novelty of a shiny washing machine has worn off. 

Mui xxx